From loss, a plan for families
of ill children

By
Megan Tench, Globe Staff, 2/1/2001

Two heart valves, each no bigger than a dime, were removed from Devon-Nicole's
9-pound body. She died in July 1999 from complications of delivery five
days after she was born in a New Hampshire hospital. Soon after, her tiny
valves pumped life back into a 3-day-old baby boy and a newborn baby girl.

And now, Missert, 36, and his wife, Deanna, are on a mission to memorialize
Devon-Nicole by establishing a home away from home for families whose
children are patients at Children's.

But their dream for Devon Nicole's House is running into the harsh reality
of Boston's real estate market.

Thomas Missert, who lives in New Hampshire with his wife and 3-year-old
triplets, toured the cardiac unit at Children's three weeks ago, and he
was struck by the lack of accommodations for out-of-town families wishing
to be close to their children who are patients.

''We know there are a lot of obstacles,'' said Missert. ''But there is
certainly a need there. This is not a new idea to Children's Hospital
or other groups and organizations. There just hasn't been a focus to give
this effort a real push.''

But according to real estate and neighborhood development experts, the
Missert family is facing a huge undertaking, soaring prices for houses
and apartments in Greater Boston.

But Boston's hot real estate market doesn't deter the Misserts. They say
they plan to pour the same time, energy, and love into establishing Devon
Nicole's House as if they were raising their little girl.

''They [Children's] have about 50 beds for the kids in the cardiac unit
alone, and about nine cots are all they have to support typically 20 to
30 families,'' Thomas Missert said.

There are several programs that already provide accommodations for families,
such as Ronald McDonald House, which is typically used by families of
oncology patients, and hospitality programs in which local families donate
space in their homes for out-of-town families, said Susan Craig, a hospital
spokeswoman.

''We do allow one parent to stay overnight in some units,'' she said.
''They can stay bedside, but not for a long period of time.''

Hospital officials will also refer families to other programs, such as
Saint Margaret's Convent, or make referrals to more inexpensive hotels.

But the hospital does not provide a freestanding building with long-term
accommodations. The proposed Devon Nicole's House would have room for
about 15 families, a communal kitchen, a library with online services,
and a small staff.

The Misserts have already appointed eight members to the board of directors
for Devon-Nicole's House. They have secured donations from community members
and friends, and they have begun fund-raising with a goal of $5 million
to purchase and maintain a building in Brookline or Chestnut Hill.

''We have no reasons why, but we've been led to do this,'' said Missert.

He spoke of his memory of holding his daughter in the last few days of
her life.

''It was hard to watch during the course of the afternoon,'' he said.
''Devon's heartbeat dropped from normal to 65 beats per minute. Each time
it would come back up, but then it would beat even slower.''

Soon after, their little girl was gone. But Thomas and Deanna Missert
are intent on bringing Devon Nicole's House to life to make sure she is
never forgotten.

On Feb. 10, a Valentine's Dinner Cruise on the motor vessel Odyssey to
benefit Devon Nicole's House will depart from Rowes Wharf in Boston. For
tickets and information, call 603-437-3670 or check the Web site www.devonshouse.org.